By Julia Merulla Niagara Gazette The Niagara Gazette Thu Aug 18, 2011, 11:36 PM EDT
NIAGARA FALLS — Dominic Pennesi should be walking by now.
At 14 months old, he is still unable to sit up or hold a bottle.
Dominic suffers from a rare congenital disease that could kill him if not treated. He has already had four brain surgeries and is expected to have a fifth surgery in January.
To help defray his medical costs friends and family members have organized a fundraiser for him from noon to 6 p.m. Saturday at the Elks Lodge, 1805 Fashion Outlet Blvd.
Dominic’s condition, called Vein of Galen Malformation, has only 300 recorded cases in U.S. history.
His mother, Anna Pennesi, a maternity nurse at Niagara Falls Memorial Hospital, described it as “like a brain aneurysm but the deadliest form you can have.” Dominic has had four brain surgeries and is going in for a fifth in January.
The family’s medical bills are considerable, but are compounded by visits to see Dr. Alejandro Berenstein, one of the only doctors who can treat Dominic, at St. Luke Roosevelt Hospital in Manhattan. The trips to New York City for 10 days at a time increase the financial burden. Dominic’s father said the family is already $50,000 in debt.
There’s also the riskiness of operating on a baby. Family members said Dominic’s arteries and veins have been weakened by previous surgeries and doctors have difficulty accessing the malformation. During his last surgery in early May, doctors went in through the carotid artery in his neck — a procedure that hadn’t been done on an infant in 30 years, Anna said.
Despite Dominic’s troubles, family members say he is a wonderful little boy.
“He's got a smile on his face all the time” said Dominic’s grandmother, Carol Pennesi. “He’s the toughest little trooper you'd ever see in your life.”
Both Anna and Dominic’s father, Richard Pennesi, a Niagara Falls pipefitter, said they are incredibly grateful for others’ efforts to help them and their family, which includes Dominic’s siblings, Alyssa, 6, and Anthony, 5.
“I'll never be able to repay them for everything they've done for us,” Anna said. “We would like to thank all the support from the community for Dominic’s benefit. We are overwhelmed with the kindness and generosity of strangers.”
The family was especially grateful to Kris Snell for all his hard work in organizing the benefit and to the child’s grandmother, Carol Pennesi, for her countless hours of gathering baskets, Anna said.
A $20 donation will be requested at the door, which includes a pasta dinner, salad, dessert and a door prize. For tickets, call Carol at 283-5924, Kris at 471-1773 or Bonnie at 417-6989.
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